Parent Voices

Being a Dad to Disabled Twins Isn't Worse, It's Just Different...

You probably imagine that being a dad to severely disabled twins isn't much fun.

I don't completely disagree with you. The guy who said "Oh God, that must be like a death sentence" was probably taking it a bit far, but fair dos, it can be 'challenging'.

But what you also need to know is that it's the best thing that's ever happened to me. You don't believe me - don't worry, nobody ever does - and why should you? It's a life of hospitals, sleepless nights, thoughtless remarks and uncomfortable stares.

But, you see, when we wheel our twins through the shopping centre and people stare at us - at them - I feel nothing but huge pride because I know what they've overcome to be here.

Our twins were born prematurely. They weren't messing about with a few weeks here or there, they were properly early - more than four months. We joked that it was because they were so keen to meet their parents, but we were smiling on the other side of our faces when the battle began...

Alice had four heart attacks on the first night of her life. The next day the South East of England suffered a power cut and the machines that were keeping our babies alive cut out. Then, on day three, we were asked if we wanted to have Thomas baptised because he was going to die within the next 20 minutes. It was a rude and shocking beginning to our lives as mum and dad.

But they made it, and after nine months in hospital they came home. Soon after, we received the diagnosis that would change our lives for ever... The impact of those early days was that the twins would never walk or talk and that they had severe quadriplegic, athetoid cerebral palsy.

It took us a long time to reconcile ourselves to the fact that life was going to be very different from here on in. But slowly, acceptance and eventually celebration of the miracle twins and the light they bring to the world. Their victories, so tiny for so called normal children, are their Mount Everests. Like the first time that Alice, through sheer force of will, managed to say the words, "I love you, Daddy" after 10 years of trying. Like the first time that Thomas got a powered wheelchair and realised that, for the first time in his life, he was able to go exactly where HE wanted, rather than where we pushed him.

And think about the fringe benefits... Unlike more typical kids, they can't run away from you when you want to hug them; they can't embarrass you by repeating your swear words (we probably take too much advantage of this one). Plus we get to park wherever we want at the supermarket...

So if you were to ask me if I would change things if I could, the answer isn't as straightforward as you might imagine. Of course, I wish with every fibre of my being that life could be easier for them, that they didn't have to undergo so many operations and live with such pain.

But for my own part, to the extent not that it's possible to separate my feelings from theirs; I have grown so much for the experience of being their dad. The lessons they teach me every day make me determined to be better.

Over time I have come to realise that being dad to disabled kids isn't necessarily worse than everyone else's experience of being a parent. It's just different. And what's not to love about that?

Two For Joy by James Melville-Ross is published by John Blake Publishing and is released on 2 June 2016 (ISBN-10: 1786060108)